Friday, 29 January 2016

[Image: woman standing next to a wheelchair and holding walking stick. Same image is repeated in four coloured squares]

This is a reworking of an old post as this issue comes up again and again. De ja vu from Buzzfeed this time. Ignorant abelist crap and objectification of a person with disability as an object of mockery because they stood from their wheelchair.

I'm tired. Tired of having the same conversation, about the same issues. Year after year after year. Back when I started this blog in 2009 I was discussing the hurtful comments challenging the validity, or existence, of illness. I have banged on about the whole myth of the look of illness and challenged perceptions about what constitutes disability. I have written so many posts on the topic that I couldn't even pick one to link up. And still, nearly 7 years after I first pushed publish, posts like today's ableist trash from Buzzfeed A man stood up out of his wheelchair after a Roger Federer Miracle shot(although they are not alone as other outlets such as The Daily MailAustralia also thought it was hilarious),are doing the rounds of the Internet on a regular basis. And people continue to find them funny.A man in a wheelchair stood up when Roger Federer hit a great shot at the Australian Open, and he became the subject of widespread mockery. A man went out to an event using a wheelchair for reasons only known to him. He enjoyed his evening and dared to show his excitement. And people decided he was fair game for mockery. Because disabled people, especially those who don't meet false expectations of disability, are by their very existence, fodder for jokes.

When I write an article many readers tend to relate to the issues I discuss. They have had the same experiences and the same reactions: hurt, anger, frustration, an overwhelming desire to resort to violence. But in many ways this is preaching to the converted. Those who read predominantly share the same views on these topics. But in the wider community it seems that little has changed. This "miracle" and "cure" joke, is doing the rounds, again. Because an ignorant and ableist journalist, although I use that term loosely, fails to understand that many wheelchair users like myself, aren't paralysed. Not only that, he trolled through social media to find gifs and tweets from fellow ignorant ableist citizens to share and enhance the hilarity. And what disappoints me even more, a Buzzfeed editor gave it a stamp of approval and it was published. The journalist and the posters, have not taken the time to think about the message such an article sends to friends and family who are living with illnesses that don't meet the limited ideal portrayed in the media. It also says a lot about how society, including a major internet site that claims to care about various isms, continues to view disability and illness in this day and age.It says your illness and your experience is a joke. When they laugh at such an image they are essentially saying you, your illness, your challenges, pain etc are meaningless. When those who use a wheelchair but can still mobilise independently over short distances see such an article it is hard not to take offence. We know the mental and emotional challenge it can take to simple accept the need for a wheelchair. That we have internalised abelism that we must fight every day. We know that a wheelchair means difference at an age where most are simply out living life, starting careers, studying, having children or travelling. We know that every time we head out into the world someone will find our life a joke. Or, if you are unlucky enough to be this man, you and your situation, become a beacon for global for mockery.I can say we shouldn't care. I can say we should simply ignore this article and others like it.

But sometimes no matter how stoic we are, such attitudes cut deep. And frankly, why the hell should we have to put up with mockery and disrespect on top of having to live with disability or debilitating illness?

Those who have not personally experienced serious or prolonged illness; who have never known the challenges of disability or seen how they affect a loved one, seem to still find the whole experience as nothing more than fodder for laughter.What is lacking in our culture that many feel they have the right to mock, judge, or police others, for circumstances they don't bother to understand? When did compassion and minding your own damn business, get replaced with picking others apart for sport?

The idea that the only viable illness is one that lends itself to clear external markers, such as loss of hair or tubes and bandages, is so incredibly incorrect, as to make it laughable, especially given that figures for so called invisible illnesses are as high as 1 in 2 in some countries. The idea that disability is only seen in the use of a wheelchair, something unfortunately perpetuated by the most commonly used symbol for disability found on blue and white stickers worldwide, excludes millions of people in Australia alone (currently estimates are that approximately 20% of the population are living with some form of disability, only a small percentage of those are permanently in wheelchairs). The idea that only those with paralysis use wheelchairs is equally damaging to a large percentage of users who, like myself, can walk very short distances but are frequently unable to stand or walk for any substantial distance, or depending on the day, unable even to walk one or two steps. Without my wheelchair I would rarely leave my house. Without my wheelchair I wouldn't shop. I'd never go to a gallery or a market. Or even attend many medical appointments. I have even been known to use my limited energy to push myself up from my wheelchair to grab a product from a higher shelf. I could very easily have been the man in that article.

If those who laughed at the article, or mocked others in the community for standing from their wheelchair, took the time to speak to the person in question they may find that they are recovering from surgery or illness or have Dysautonomia, Myotonia, Multiple Sclerosis, cancer, lung disease, heart failure, Ehlers Danlos Syndrome, Arthritis, Chronic Regional Pain Syndrome, or a host of other disabling conditions. But should these people have to explain themselves to the mockers? Should they have to lay bare their medical history to receive a basic level of respect?Should we all wear coloured vests or carry neon signs stating our sick credentials to be treated with dignity?This and other instances of the same"joke" (here, here), that continues to make the rounds on the Internet, is nothing short of insulting and reflects a basic lack of empathy and character upon those who both continue to share it, and those who laugh or say nothing.

I am tired of having to justify my existence to the wider community. I am tired of friends having to justify the use of mobility aides such as wheelchairs. I am not here to educate every idiot who finds this crap funny. I have enough on my plate to deal with on a day-to-day level. I don't need the added burden of playing the role of teacher every single day, day-after-day, year-after-year, for people who don't bother to think of how their attitudes affect those of us who have been in that man's position, or that man himself. Or who don't realise that they, or someone they love, may one day develop an illness or acquire an injury that will put them in such a position.

This is not about a lack of sense of humour, as is often the accusation made when people like myself question such jokes. Many of us in the chronic illness and disability community have well developed senses of humour. It is what helps make our lives bearable. We find the funny in the most unfunny of experiences. But we are using our own experiences, we mock ourselves not other people. We tread the hard path, the pain, the fear, the tears and the doubt, and we have the right to use our experiences. Others do not.It is me who cannot stand, who collapses on the floor, who vomits up food on a regular basis, who cannot always hold a glass, and who cries into my pillow from the often unrelenting pain in my body. It is me who is often unable to walk from my bed to my bathroom and has undergone numerous painful and scary medical tests. And it is me who needs to use a wheelchair to access the world and doesn't meet the simplistic perceptions of others. I have paid my dues and can laugh at my experiences. But when able-bodied people post articles like this one, when they mock, or make derisive comments, they are misappropriating and minimising my experience and the experience of many others, for a cheap laugh.

It is nothing short of insulting and offensive.Just as we shouldn't put up with sexist, racist, or homophobic memes, we shouldn't put up with this ableist crap either.I am tired of having to explain myself. But I am more tired of simply sitting back and putting up with discrimination sugar-coated as humour.If you post, share, or laugh at memes such as this, you are an arsehole. If you see it and say nothing, you are giving your tacit approval to that attitude. And I for one am going to call you on it.Also check out more on this from:The #AusOpen Miracle, and A man stood out of his wheelchair after a Roger Federer Miracle Shot.

Update: Buzzfeed have decided to try and save the piece by adding five tweets from disability advocates. A piss poor attempt to placate the disability community and completely missing the point yet again. This doesn't alter the fact that they saw fit to post the piece in the first place and continue to see it as an appropriate piece. They even add a note at the bottom to say: UPDATE

If this meets their editorial standards for reporting on disability I am truly disgusted. The piece needs to be removed, a no excuse apology offered, and consultation with the disability community undertaken immediately. This is more than simply an error of judgement. The piece was written, editor approved, and following justifiable outrage from the disability community, this is the response they chose.

Oh and it's not that we're "Not Happy" as the new improved title suggests. We're angry that a major media outlet would think that this shit is in any way appropriate. We're angry that they fail to see that this is the kind of bullshit that perpetuates stereotypes and cause harm. And if they'd bothered to read even one of the many blog posts or comments by disabled people they'd actually understand exactly why we have reacted in the manner that we have and why their non-apology, no effort, response is an infantalising pat on our heads. Michelle

Friday, 15 January 2016

[Image: Man holding a woman with a walking stick up in the waves at the beach]

A short chronic love story.

"Let's go in the waves" she said.
"It'll be fun" she said.
She forgot about the strong undertow and the big sign out front
warning of strong currents, rips, and sand bars.
She also forgot about her neuromuscular issues, and weakness, and
that pesky problem she has with being upright.
She told herself about the compression from the water.
He laughed and held her up as the waves and undertow tried to take
her out.
She lost control of her walking stick and her legs kept
collapsing.
But she laughed and he laughed.
Great squeals of laughter.
He picked her up and held her tight as the waves churned and
roared around her legs.
Then he carried her back up the beach, her arms slipping again and
again from his neck.
She flopped on the blue and white throw, not to move again for some time.
He passed her the water bottle and reminded her to drink.
She breathed in and felt her body ache and tremble with
exhaustion.
Everything hurt and she wanted to vomit.
But damn she felt better than she had in all the past year.